Friday, April 22, 2011

Getting Too Comfortable

Just when we were settling into some warped sense of normalcy, William spiked a 101.1 degree temperature yesterday afternoon. I took it multiple times with varying thermometers in various places. I like to think I'm thorough, not desperate. There was no way I could pretend he was just extra warm from laying under a blanket. (I made him remove that and sit for a bit before rechecking his temperature). He was also unusually lethargic. I made the call. I got the expected answer. I obeyed. Darn it!

When William and I arrived at the hospital his fever was gone. Darn it! But I did a little self-talk to reassure myself that I did the right thing in bringing him in. Thankfully the doctor gave orders to treat him as outpatient since he was not neutropenic. Labs for blood cultures were drawn (to detect an infection), a round of antibiotics were administered, and we were sent home around 11PM. Yippee! I celebrated with cinnamon twists from Taco Bell on the way home. William slept.

William went to work with Ryan today because William had his MIBG scan at the hospital and with the boys on spring break it was just easier for Ryan to take him today. And it was a good excuse for Ryan to come home a little early too. I spent the day on the hunt for paint colors for a boys bedroom while towing around 4 boys that really needed to run at the park. For those that know our home, the Winnie the Pooh mural from the previous owner is finally being dealt with! With all the time not spent in the hospital, Ryan and I are starting to get the projecting/DIY itch. I planted our garden a couple weeks ago and planted flowers in the front yard this week. I also painted doors and door casings on new doors we had put in during a minor remodel 2 years ago, but never got around to painting. When Ryan got home with William, we start putting up paint swatches. Then the call came. The blood cultures came back positive for infection and William needed to come back to be admitted to the hospital. We packed up the paint for another weekend and packed the suitcase.

William has never had a positive blood culture for all the countless times he's been hospitalized with a fever. I suppose this could be a rite of passage---one thing we hadn't experienced yet. Perhaps we can gain increased empathy with this....

It's been 2 months since William has been inpatient. That was when he was discharged after transplant in San Francisco. It's been since November 21 when he was inpatient here in Sacramento! That is amazing, but it doesn't feel good to be back. However, it is nice to see our nurse friends that are so great. Oh, and one perk of being a bone marrow transplant patient is a private room. It may be the only perk, but it's a huge perk!

I know very little worth mentioning about the infection and the length of this stay yet. Tomorrow morning I will smother the doctor with my questions. The nurse said there is a chance he'll only be here 4 days, but it could be 10. My problem with all that is on Tuesday William is supposed to be in SF for a bone marrow biopsy where additional samples are to be drawn as part of the antibody therapy. Also, he is supposed to be admitted to UCSF a week from Monday as part of the antibody therapy. This pesky infection is putting a wrench in my nice little schedule I thought I could schedule. I also worry about the timing of the antibody study being thrown off. I worry about... stop. I can't worry about what I can't control, but I do.

The other bummer of the day is that Ryan and I were planning on surprising the boys by taking them to the drive-in tonight to see Rio since William can't go to theaters. Oh well. We're flexible like that.

Side note: The lab results for labs drawn in SF earlier this week to see how William's immune system is recovering won't be ready until Monday. The doctor didn't think it was likely that the restrictions/precautions would be lifted until the 6 month mark (end of July).


  1. Just talked to Ryan--there is alot happening to you, besides Easter and the hospitalization, even. Hopefully Will's fever won't include any jelly bean or chocolate restrictions! We miss you all so much. Kisses and hugs from grandma to Will!

  2. we love you guys and pray for you non stop. xoxoxoxoxo